"always smiling and always will"...a moto of mine that has stuck with me for years. Loving life since my transplant! Taking on various challenges from the Bupa Great South Run; UK, European & World Transplant Games in various sports; travelling the globe & sailing in the Clipper 11-12 Race. This year competing with Team GB in the World Transplant Games, South Africa

Jussie sails with Clipper 11-12

I sailed the last leg (8) in 2012 - USA,Nova Scotia,Ireland,Netherlands & UK. Travelling 4,000 miles, approx 22 days at sea, with 4 races in this leg.

Wednesday, 11 February 2009

Past Memories

Hi everyone....hope you are having a good week so far!?

I often have people asking me about my journey, and it has been mentioned that when I was in a coma not much was on my website about this. Recently, on the Lamline (forum for other women with the rare illness - Lam) it was asked about again. Below is the response to the email in question, which I decided to copy and paste on here too.Also I am no longer with my fiance who you all knew stood by me throughout my illness and the transplant, and I talk about that aswell at the end of the email.

........"As for the induced coma - and no talk of it on my website.....I went back to have a look myself. As I was very ill, my Dad was writing "updates" on my progresses with my health at the time - and when I was able - he was my PA..and wrote out what I wanted to say on my diaries and type them out for me.

My updates started in April - after the period of the coma. I went into a coma shortly after my Birthday - and for 3 weeks. My lung had collapsed 3 times within a week, and I told Dr.carby that the 3rd time - I was telling my dad my funeral wishes (it was a close call!)....and the team at the hospital/Carby decided that an operation would be performed to try and do something to what was left of my left lung (no right lung functioning by this time). I didn't take to it - which is why I was put into a coma. It was supposed to be a four hour operation......not quite - eh!!

My Dad also never wrote any updates - my parents I have learned during this time - underwent counselling - and preparations in the eventuality of my death. It was a very difficult time for them both - and I can understand not something easy to even want to write about.

Even when I came round from the coma, I still remained on life support for weeks - and wasn't told initially that I had been sleeping for weeks! So even when my Dad was my PA..my first exerpts never mentioned anything. However, Jon (who was my fiance at the time - decided to tell me). Jon told me I had been asleep for 3 weeks, got MRSA, pseudomonas, C Diff, an urinary infection, had an eye infection.....OMG I couldn't even comprehend this..I was unable to talk,move,eat, or drink!

However, I found some lines, that I did write about being in this condition as below:-

March 8th 2006..."" Hallo everyone. Thank you to my Dad who is typing this for me.I'm on a ventilator to help me breathe - and I still can't talk or eat. So right now I have food on a drip.

Its hard - but I have good and bad days and I reckon it will take weeks yet to progress."March 11th 2006...."I'm attached to a Spaghetti Junction. On a ventilator - probably will be on this for weeks to help me breathe.Getting stronger daily, a slow progress.Can't believe how long I've been here & how ill I was during my sedation period.Wanting to get better and wean myself off ventilator..............oh the joys to be able to eat, drink and talk again!!!! Something to look 4ward too."March 15th 2006..""Had a scare yesterday when inside of lung collapsed. Doctors sent me to sleep plus drugs to paralyse me. Another chest drain was inserted on my chest. I've lost count now how many left "Freds" I've had...8 or 9...

Feel ok...just want to come off vent machine still. Allowed tiny sips of water through a straw now. Also flavours on the tongue - but no swallowing - I have about 5 different cordials and mix and match. I taste on a pink sponge which I squeeze excess dry then swab on tongue."

April 4th 2006...."From February - having 3 lung collapses in a week. On the 3rd lung collapse I was then thinking I was not going to make it - and saying goodbye to everyone. Then undergoing a risky operation from or after which I contracted contracted many infections and then being on a life support machine for weeks while I was unconscious.

I can't believe all that I've been through - it's a miracle I am still alive - I just don't know how. What a battle I've faced! I just hope that I get my chance for a transplant whilst I'm here."April 12th 2006...."Today, has been the first day that I felt better and I must re-start my physio and weaning again. It was hard getting up to try to walk again. It seems to take such a long time. My muscles have so wasted away - guess its going to take time. So, I know from that alone - I will be here for some time just trying to learn to walk again - one of the things we take for granted."April 23rd 2006..."This is a hard battle I'm facing - and oh for the day this is over, and I can be 'normal' again. To be like everyone else... walking, breathing, eating properly, to exercise, to live a life away from living a life in hospitals."Also, I have to be honest..that whole experience for me - was extremely difficult - and a very DARK phase in my life - when if I'm honest, how I was at that time..I just kept writing I'm dying all the time..I was struggling to breathe even with the ventilator...and there is nothing more scary than hearing a machine breathe for you and work as your lungs - whilst you are awake and conscious..totally freaked me out! I rarely talk about those times - which is why perhaps - there isnt so much written on my website. I am finding that now these images and scenarios are re-surfacing - and sometimes upsets me so much. I can't believe I endured and survived all this - when even after the transplant, my surgeon said "technically I should have been dead!" (my lungs were completely destroyed with dead lung tissue and cysts).But, I must stress again - I am a very positive person - and my case is very rare in terms of the advanced symptons of Lam. It doesn't mean you or any newcomers will go through what I endured. But, I hope by being so frank - it WILL help anyone who may face difficulties with lam at a later stage.I also did mention some of my ordeal when Melissa was going through a very rough time (still miss Melissa very much) and I opened my heart to the realness of my times in ITU - and loosing all sense of dignity and hygiene - as I was a vegetable and unable to do anything myself.My journey has taken a full circle. I live for life. I have a zest for life like never before. I do not wish in a million years I went through any of what I did. However, I kinda believed it was meant to happen - to give me understanding how prescious life is....how to appreciate all and everything every day. To always be happy and smile, and try and achieve things/goals with my extension. It gave me a purpose to raise lam and organ donor awareness..in the media...raise funds...give talks..and now I am going into my 5th year of this!!Phew......this IS a long email...sorry peeps...Oh see I did tell those - that I can waffle too!!!! ..ooopppps And as to the fairy tale - well that ended - Jon and I grew apart - both wanted different things. But we are still in touch and get on very well. We both have moved on with new partners and both happy....aww

Contact ME

World Transplant Games

Website used from 2005-2009

About Me

I am very lucky to be alive after a double-lung transplant in July 2006. I suffered the rarest lung disease called, Lymphangioleiomyomatosis (Lam). I kept fighting for my life and trying to breathe each time my lung collapsed (15 times). I used to be on 24 hour oxygen to help me breathe and also wheelchair bound. At one stage I ended up in a coma (3weeks) and remained on life support for almost 2 months. I had to learn how to walk again with a zimaframe, and start to re-build my life/confidence/strength up. I want to enjoy my life with the extension this transplant has given me. My journey post transplant has been challenging with health issues, but, I try to remain as positive as possible.